Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

Author
Topic: How long have you been on the same combo? (Read 4627 times)

This is just a question that popped in to my head. I am going to the drug websites and doing my research so that when I have to start therapy I have an understanding of my options; and I was at the Sustiva website and it said proven to suppress viral load for 6 years. That doesn't seem like that long. A lot of you all on this site have said you have been on treatment for years, but I don't get a sense of how many of you have had to change the drugs you were using because of drug resistance/adherance, or side effects. Are there a lot of people out of treatment options? They say that your first combo is the best for longterm suppression. Who has had the longest suppression with their initial combo? Are there still people on the same combo after 10, 15 years?Basically, I'm trying to get an idea about how many times those with HIV change combos, and what are the reasons. Having to switch every 3 years is a lot different than every 10 years.

I started on the Crixivan/AZT/3TC trial in '94, and I was in the lucky 1/3rd who received all the real drugs.I stayed on that combo until about 2000, and then switched to Sustiva/Combivir--not due to failure, but in hopes that the lipidystrophy would be less or stop (particularly the buffalo hump I was starting to grow). It did stop growing, in fact, and I've been on the Sustiva/Combivir ever since.I'm just now looking into my other options--again, not due to failure, but due to side affects that I can't get a handle on.

I'm not sure if a lot of people actually know how long their combo will work. It is only since HAART (using 3 different drugs in combination) that we see successful viral suppression, so that means we only have 10-14 years of data to analyze. I think that Sustiva has only been on the market for 8 years so there would be a limited amount of data about how long it works for the "average" person. It is my understanding that treatment-naive people who started HAART have less instances of drug failure than those who started treatment when there was only a few options. We also now do the RNA or DNA tests on patients' virus before initiating drug therapy to prevent failure from occurring as often. I've been told by two different doctors that they do not know for certain that a combonation will eventually fail.

There are more knowledgable members of the forum than myself, they may have different views.

Yeah, I know there is limit data because HAART has only been around for a relatively short time, and it does get complicated because there was a lot of people on monotherapy before that, whom because of that have have developed/are developing drug restistance.But there really is not a study out there with empirical data. So I'm just trying to take an informal one. A census of those who use this site. The ones who were pre-HAART and those who started treatment during HAART era. Who is still on their original combo, and if they switched why?I see a lot about resistence and failure, etc, but I can never find any real evidence that these people are citing. So I want to talk to the people and see what the experience is like.

I'm on Haart since 1996. Began with AZT, 3TC, Crixivan. Had to switch Crixivan for Kaletra in 2002 because of kidhey stones problem.I have been undetectable since 1996 and still continue to be.

3 weeks ago , I decided to switch all this for the new"fashionable" combo Truvada/Reyataz that is supposed to be kinder for lipid levels. Should it work well, I will keep on this combo as long as possible.

From what I've seen and read, this 6 year suggestion is mostly due to the drugs being fairly new, so long term data simply is not available. I have also noticed many long timers are being switched to the latest meds, like sustiva. Not because of any failure with their original meds, but in that the newer meds are easier on the body and taking the meds are not so time-food related. Just makes it easier for those who started on the earlier meds. My close friend out west went on the first meds back in 1995. He has been undetectable the whole time. Just 6 months ago they switched him onto sustiva/truvada, just to simplify his meds. As far as I know, these newer meds donít really have a 'time frame" in their ability to work, as of yet.Especially for first timers starting on these newer meds, I get the impression they can live a fairly normal life span. Lets hope so...

Was on Truvada, Reyataz, Norvir for several months. Superb suppression but caused nightmares and strange mental issues. Doctor swapped for Norvir, Epzicom, Lexiva. There was no failure in initial regimen, i.e., failure was not the reason for the swap

Maybe my Dr. is too optimistic. But according to him, drugs should never fail if you are adherent. Even in the protocols about HIV from the Spanish Social Security (Gesida) I could read the virus is still undetectable after a week without meds, so they consider skiping the drugs a few days should not cause resistance. Myabe we are optimistic here in Spain....

I started on my combo the third week of October of 2003, The initial combo was Viramune, epivir, and Zerit. The Zerit was dropped , and replaced with Ziagen, a month or so after starting meds. Viread was added September of 04. When Epivir and Ziagen became available in one pill (Epzicom) I switched to that.

<<Maybe my Dr. is too optimistic. But according to him, drugs should never fail if you are adherent. >>

Does he take into account long term side effects? Slow mutation over time? I suppose he has a point if you are really, seriously willing to stretch the words "never" and "fail."

It sounds like he is not only being awfully optimistic, but setting his patients up for serious disappointment and self-blame if and when their combos DO fail. This board really is packed with people who, over time, experienced treatment failure despite acceptable adherence.

One of the troubling things about the meds and dr's views of them is the simple fact that we are STILL in long-term studies regarding HAART. In a very real sense, we are the guinea pigs for it.

The OP asked if anyone was still on the same combo for twenty years.

We have not even HAD HAART for twenty years.

Less than fifteen years ago, AZT monotherapy was the standard of care.

With the FDA fast-tracking the protease inhibitors, they landed on the market about eighteen months past the inception of preliminary human testing. So any information we have on their long-term efficacy (and long term side effects) is either theoretical or based on MAYBE eleven years of patient tracking.

I think we need to keep that in mind when we are being fed advice from professionals OR from our peers. This is new science. Every year we expand the boundaries of knowledge exponentially.

It is quite possible that a person starting drug treatment today, in 2006, will indeed spend the next ten years or more without changing drugs. And might only change therapy because it's been streamlined and refined to make it easier and less intrusive.

I am a big believer of optimism, when it is quantified by scientific data.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

In response to long term side effects: though HIV medications are different from diabetes meds, cholesterol meds, etc, a lot of the concerns about the long term effects are things that you here people talk about for any type of drugs. Mainly toxicity. With all medications, they are foreign products entering the biological being of your body, and just like all medications your body will try and get rid of them. Now how much damage the medicine does is probably related a lot to the individual. And some of these effects my take decades to materialize in any real way.I like people thinking about these things and being concerned, but not to take it to extremes. Just like people are blasting the health risks of caffeine, sugars, etc. for long term effects. People have been drinking coffees, eating sugar for centuries (if not milennia) and have lived normal lives. And not to compare apples and oranges, but they are both fruits. Some are "natural" objects entering the body, some are "man-made" compounds. And just as we injest mocha lattes and diet cokes, we injest medical drugs that are keeping a lot people, with all kinds of ailments, alive. (And have been for decades) Be concerned, but be grateful.(And to be fair to those on medications, I am not yet, but it sounds to me like for a lot of people they are working fine. Just wanted to be an encouragement.

Actually, I would be interested in hearing about other meds taken for a lifetime that cause lipoatrophy/dostrophy, neuropathy, and other potentially debilitating, even fatal interactions over time.

I think HIV meds have given many of us a new lease on life, don't get me wrong. But pretending that these are not some of the most toxic, most demanding lifelong chemotherapies known to man would be misstating their powerful nature.

Seriously, You can't compare a decade of 3TC or Crixovan with a decade of drinking coffee.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Hey all,I've been on the same combo AZT, 3TC (Epivir) and Crixivan, since May 1996. I originally started with Saquinovir in March of that year, but had nasty side effects from it and, when Crix became available in my area, switched to that. I didn't even have to go onto the waiting list that so many others had to be put on.

Been undetectable since June 1996. My January CD4 was 1,462. Tested positive in 1985.

As for side effects:Had "sludge" in my kidneys as a result of the Crixivan. Began drinking copious amounts of water (64 ounces a day) and the problem went away.

I have readily visible lipoatrophy, but part of this is due to the fact that I was always thin and any fat loss is readily noticeable.

No sign of lipohytropathy as yet. I keep watching.

Lipid levels are a concern. When I see the doc next Wednesday, he and I are going to talk about niacin therapy. He doesn't know this yet, but we are.

Was on Vytorin, but it did nasty things to me, so my doc told me to stop after six weeks.

I found out I was poz in August 1992 and I began taking meds in July 1998...Viracept and Combivir. I did reach an undetectable VL for a short time but after having two consecutive detectable VL tests (at 12 months & 15 month) my meds were switched (but no resistance test was done). I switched to Sustiva, Videx & Zerit....which I remained on for about 2.5 yrs before I demanded that my doctor take me off the Videx & Zerit because of lipoatrophy. My doctor resisted switching because I had been undetectable the entire time I was on this combo.....but I would not take no for and answer. I then went to Sustiva & Trizivir for about a month but had to switch again because I was having a reaction to the abacavir that was in the Trizivir. At that point I started taking Sustiva, Combivir & Viread and have been on that combo ever since......over 4 years now. And it wasn't until I started this combo that my cd4's really began to rise. If my memory serves my right I had a cd4 count back then of about 450 and my most recent labs showed a cd4 count of 976.

I have been very pleased with my current combo and have few side effects but the next time I see my doctor I'm going to talk to him about the possibility of getting off the AZT and going to just Sustiva & Truvada. I don't know if he'll go for it because of the fact that I never had a resistance test done after my first combo failed.....but it won't hurt to ask.

Wow, J.R.E you've been positive for 21 years. Was 2003 the first time you took any kind of treatment? What was the issue with the Zerit? Side effects?

Hello B99,

Yes, that was my first regimen. I was never on ART's. I had no bad reaction to the Zerit, at that time. Fortunately I had no bad reaction at all, to starting on meds. Zerit is considered second line of treatment, and not the preferred first start of treatment.

Also back then, I had gone through a 30 pound weight drop, over a period of about 10 months, just prior to starting on meds. Zerit can cause weight loss (fat loss ) in the arms face and legs. Perhaps that was the reason the doctor switched me from the Zerit to the Ziagen.I didn't look too well back then. Perhaps back in 2003, more info was coming out about Zerit, which may have been another reason the doctor switched me. I don't believe Zerit is used that much anymore, however, it is still used. There are more potent drugs out there.

I was diagnosed HIV positive in October of 1985. I was infected, the forth of July weekend in 1985. So, this week,will begin my start , of my 21st year of living with HIV.

I've been on Sustiva & Combivir for 6 years and VL has remained undetactable with CD4 always around 750. No major side effects other than feeling like i'm losing my marbles and can't seem to concentrate, and get seriously angry a lot over nothing!